It's Time to Study!

So I haven't posted on here since April...mainly because I've been super busy but also because nothing has really happened in this department...no body news, no baby news, no anything.

Well now it's time to update!

I am officially a self-employed wifey who takes care of our home and is working on expanding my crafting business! My husband (you all know he's amazing if you've been reading my blogs) is so encouraging and is so happy to have me home and happy. Of course, one of the main things I'm getting in to right now is researching surrogacy!

Here in Michigan, the laws on surrogacy are very...gray. Some states it's quite clear whether surrogacy is legal or not..but here in Michigan, there's a lot of lawyer involvement and easy ways to "accidentally commit a felony" as one site said. I'm sorry, but accidentally committing a felony is not on my top list of things I'm looking to do in the future. Some of the laws state that if a surrogate is compensated in any way, including gifts of monetary value, it is considered illegal, but paying for doctors visits is legal. If a surrogate is found to have any sort of mental disability (which in some places can even be depression) it is highly illegal and you can go to jail for 5 years for choosing her. Um hi, future surrogate, please don't throw me in jail...thanks!

So now I will research and research and research until my little fingers can't type anymore and my eyes can't read to make sure we are able to create this gift and get this angel in our lives to help us. We are not allowed to use a surrogate through an agency (they sign up for those agencies expecting compensation...ILLEGAL for Michigan fertility clinics to use since they're being paid) so we need to rely on finding a friend, relative or amazing angel stranger to carry our precious cargo for us. I will post, sometime in the future, a "seeking a surrogate" entry in hopes to find some potential surrogates, but for now, we have lots of meetings with fertility clinics and lawyers to get allllll of the vital information we need before we can even begin our process. THIS...my dear friends, is why we are all baby crazy not even a year into our marriage. We don't get the conventional way that most couples do. We can't have a nice night, get pregnant and 9 months later have our awesome kid. It will take years probably for us. We are ready now but that's just not in the future for us at this time. Some judge us saying "wait until you've been married at least a year!" Why? We ARE enjoying our marriage but we are both ready for a family. If you weren't when you first got married, that's you, this is us! We are ready to expand and can't wait to welcome a little miracle to our lives, but for us, our waiting game could be years.

To be a "normal" woman...

Ah, to be a normal woman...wouldn't that be grand? Yes, you all know about the baby thing but may not realize exactly what goes on in this mess I call my body.

Let's start with babies...we all know I "can't" have them, right? What's worse: not ever being able to have them because there is absolutely no way you could ever conceive, or being able to have that gift but risk your life and your unborn child's life doing so? It's like a tease...here, enjoy this womb that could kill you. Go ahead, fill it up then see what happens. Could you die? Maybe. Will your unborn child die? There's a good chance it could go through what my doctor likes to call "late term abortion" where I could carry for several months then my body would just say, "nah, I don't want this anymore" then dispose of it like a piece of trash. I'd have to get a port placed in my chest for dialysis 6 days a week. I'd be induced at 32 weeks then maybe go for an immediate transplant. If, by the grace of God I got pregnant and was able to successfully give birth, I wouldn't get to bond with my own baby for maybe a couple of months, who knows! I would have a terrible and terrifying pregnancy, I wouldn't get to enjoy any of it really and I may not get to enjoy my babies first months.

Here's another kicker that happens all the time that is starting to drive me up the wall...sorry, male readers, but periods. Yes, periods. I'm a woman, I have one, it's natural. But here's what's not natural...I don't get to enjoy the knowledge of when my period will arrive. Most women know their cycle, heck, some of my friends know the exact day their cycle will start. Me? Psh, haha! Nope! For example...my last period was March 21st. Do some math. No, I am not pregnant, my body just can't figure out what the F is happening inside so it just kind of forgets to, ya know, be normal? How annoying it is to never know if you're "late" or if it's just forgetting to woman. Yes I've taken tests before and you know how those tests make me feel? They crush me. I have this crazy rush of terrified, mixed with excited and topped off with depression when the test I know will say "no", says "no". I know it's VERY MUCH to my benefit that I'm never pregnant when I'm 15, 20, 30 days "late" for a period, but I hate that fear of possibly being so. I get this insane rush of "Oh crap, if I am, I need to do this, and this, and contact this doctor, and go for this surgery, and prepare for this to happen". Allen and I have serious talks about "well if I am...what do we do?" We plan, we console each other, we think positively and wipe the tears away from the negative thoughts. How lucky I am to have such an amazing husband to deal with me. To accept me, love me unconditionally, be there for me, and be 100% genuine, supportive, and loving when my body does something crazy.

Speaking of crazy, this past week, my body has been bouncing between normal blood pressure and "hypertensive emergency" levels. In a day, I could go from 128/88 then hop up to 200/144. My face gets all red, I get very hot, I feel anxious, shaky, off balance, light headed and EXHAUSTED. I have been so fatigued lately, I can't stand at some moments. Literally. I now stand as close to a bench or chair as I can when I'm at work because who knows when my body will just give up and I plop down out of sheer exhaustion from standing. I highly doubt my bosses or co-workers understand why I'm sitting. I see the judgmental looks and displeased looks from my coworkers and managers when I'm sitting. My arms feel like they're being magnetically pulled towards the ground. My legs feel like I just spent all day on a treadmill, running as fast as I could. I physically get so fatigued and exhausted that it hurts to stand. Hurts. I feel like I'm putting myself through torture just standing there, but I try to hide it all so I don't get in trouble. I bring my blood pressure machine to work and try to check it every hour...do I get to? No. Do I try? Absolutely. I get told that if I have to leave because of my blood pressure, even with proof of my doctor telling me I absolutely can not be at work, that I don't have special privileges and it would be counted against me. Well I'm aware I don't have special privileges but I am NOT going to stroke out at work. I now see it as this...I can always get another job, but I can't get another life.

Shingles...and not on my roof!

This post is all about, you guessed it, SHINGLES! They're so unbelievably joyful that I choose to take time off of work just to spend every pleasurable moment just reveling in the pain, discomfort, sick feelings and nasty blisters that accompany me, and boy is it fun!!

Actually, it's TERRIBLE but I've had some nay-sayers who believe I'm just making an excuse to not have to go to work. Come a little closer and I'll rub my shingles on you so you can enjoy them too, if they're not so bad...as you, I guess, believe!

Before I begin to describe this wondrous adventure, you may be curious as to why I have this on my "I want to be a mommy" blog. Well, when I have the shingles, I have to basically stay away from everyone except people my age who have had the chicken pox. I can not be near young children, the elderly, people who have never had the chicken pox or pregnant women. If a pregnant woman were to get the shingles, it could cause severe problems including, but not limited to, the fetus getting the chicken pox, birth defects...or even death of that unborn baby. Now imagine me, the 28 year old who has now had the shingles 14 times, getting pregnant. See where I'm going with this? Yeah...bad news bears. It's just one more glorious reason for me not being allowed to carry my own baby without severe risk.

Here's how shingles goes for me, buckle up because this is a fun ride!

Side note - my shingles ALWAYS rest on my sciatic nerve, so they're always right at the top of my bootay, in perfect alignment with the waist line of my underwear and jeans which makes for super awesome rubbing of the blisters. The blisters will either rest on the left side or right side, sometimes starting on one side and traveling over to the other. Yay..

1) My leg, whichever side the shingles are starting on, starts to get severe pain shooting up and down it in, what I call, lightning bolts. I could be fine one second then ZAP, sharp pain just zings right through my nerves.

2) My skin on the chosen side starts to become so unbelievably painful that even the lightest possible touch could make me cringe and shoot more lightning bolts through my nerves. The best way to describe the pain on my skin is like this: imagine the absolute worst sunburn you could ever experience, now go grind that skin up against some concrete to give yourself a nice road rash right over it. Now take a hot iron and press it right on there and just enjoy. Sounds delightful, yes?

3) I will begin to get a burning sensation from the inside out in the area where the shingles are beginning to form. Sometimes this burning is accompanied with a strange internal tingle that feels like little bugs crawling all over that area. From time to time, that little area will attract those awesome lightning bolts, which then begin to spread throughout more nerves.

4) Now comes the itching...oooh the itching. Shingles is the chicken pox virus dwelling inside all of us, that gets triggered by stress and hangs out on nerves. With my weakened immune system, I get them about every 2 months. Why so stressed you may ask? Read my other posts on this blog, but to name a few real quick, kidney failure, pending transplant, dangerously high blood pressure, heart problems and not allowed to carry my own babies...yet. Maybe.




5) Once I've gotten to the point where I want to rip my entire leg off and gouge out the upcoming rash, it begins to form on top of the skin. It sometimes starts off as just a small red blob, then transforms into a cluster of tiny bumps. From there it can spread, or it may stay the same size.

6)After the bumps have been around a few days, they then blister and become these absolutely disgusting fluid filled bubbles that contain the virus itself. They're so nasty and extremely painful. I usually try to sit very still in this phase because anything touching them causes excruciating pain.







 7) They then begin to rupture and scab over. The lovely phase where it turns yellow and scabby and nasty mixed in with fluid filled blisters. Even the scab hurts.






8) The scab then forms and starts to slowly go away. If part of the scab falls off, you can still see the yellow fluid bubbles resting IN THE SCAB ITSELF. The scab is sensitive to touch and this time around, it keeps sending those lightning bolts up and down my leg.




One added bonus of this round of shingles is a fantastic headache. Apparently, they were nestled so deep into the nerve this time that they reached and settled into the nerve root which then has been triggering this unbearable and throbbing headache that makes it painful to turn my head to the left or move too quickly. If I were to turn or move too quick, I get this intense throb on the left side base of my skull that just radiates and pulsates. My left leg is still very sensitive to the touch which makes me wonder if I may be brewing some more but so far, no new blisters. Now you all know what I go through when I just take time off of work to lounge around and get paid for it. Knowledge....you turds.

Tax Time Savings!

So usually my blog entries are a bit sad and depressing and make you all have a little frowny face...well, hopefully this time, I can turn that frown upside-down!

Allen (da hubs to those of you who may not know and have obviously not read the blog entry bragging and bla bla-ing about him) has a good friend he works with whose best friend works in an adoption agency. Or works with an agency...or something like that. Allen has been the main communication between all of them so all I really know is she may have access to our future baby!

We have been flirting with the idea of adoption lately, giving a baby out there a chance to a great life with us, to join our family. We haven't spoken with them yet about all of the details but the idea that we could be adopting sometime in the near future makes me excited. Yes I still get that stab of jealousy and envy when I see you all post pictures of your cute bellies, sonogram pics, being able to watch it and feel it grow, get the excitement of finding out the gender, but guess what, I'll get some of those things in my own way. I won't get a baby bump but maybe a baby gut from stress and nervous eating just waiting for that call! I may get a sonogram picture, being able to watch it grow and feeling the excitement as the gender is revealed if we work with a woman who is pregnant at the time and lets us be part. If not, I'll be able to feel it grow in my heart and watch our home become ready for OUR baby. I'll become excited when I hear what gender of baby is available to come home with us. Just knowing that I'll become a mommy, and Allen, a daddy just fills my heart with joy and so much excitement.

I was being a crazy lady on Pinterest, and I found so many adoption things that had me smiling from ear to ear. I found adoption baby showers, adopting "maternity" photo sessions, adoption quotes, books, tshirts and more! Ideas were FLYING through my head involving fundraising ideas to help with the cost of adoption (though if you look at the title, we have put a nice little chunk aside from our taxes and have a decent amount saved up but woo can it be expensive!) I've been pinning nursery ideas and even how to work your body into producing milk so I can breastfeed this new miracle even though my body didn't grow it. I know we will absolutely adore this little baby, wherever it is, but we will have to bond with it and get it to bond with us. It's a tiny stranger that we know nothing about but holy moly am I excited to learn!

This is still in the distant but near future, don't expect a post next week saying we've had a baby, but knowing that this conversation is happening, and planning and saving is happening brings me so much happiness!!

The Big Harvest

So...I saw the doctor today...guess what, more NO's! So great! Not. No...not great. As I get the blessing of more days with my husband, the more I realize that I can't wait to make him a dad. I always knew there were risks for me, lots of risks, but today, a new risk decided to be a thing, I guess.

I knew that if I were to get pregnant, I'd immediately be put on dialysis 5-6 days a week, getting a fistula, (the process of surgically connecting an artery to a vain to increase blood flow to a larger and easier access point for the very large dialysis needles), and doing all in my and the doctors power to protect my baby and myself. Well now, I guess, if I were to reach dialysis stage of my kidney disease (5% more to go before it becomes a strong suggestion) the dialysis could damage all of my eggs and run a high risk of never being able to conceive. ::stab...right to the heart...and uterus::

My doctor now says "I'd suggest harvesting and freezing your eggs, just in case. That way, if you do reach dialysis, you know you'll have healthy eggs to help with future conception." He didn't say it just like that, but you get my point.

Why? WHY? Why can't we just have our kids the normal way, the easiest way? Why do we have to spend up to $100,000 to harvest, freeze, fertilize, and implant who knows how many eggs, plus whatever cost the surrogate is charging, her doctors appointments, clothes and whatever else she needs to carry our child? My doctor even says that due to my condition(s), many of the eggs could fail...now I get the guilt of possibly putting our surrogate through miscarriages. Yippee.

My head is just swimming around in a pool of negative and positive and it's stressful. It's hard to not feel like a useless woman but I can't get myself down like that. We will be parents and it will be worth every single cent.

My mind likes to fight with itself a lot when it comes to the subject of becoming a mommy. There's positives and negatives that crash through my mind at all times. The negatives can be pretty obvious, and the positives of me not being able to carry my own child are limited, but they're there. Could someone who suffers from depression truly find positives in a situation such as this? Of course I can, I try my hardest not to dwell on the negativity.

Let's start with the negatives and get ready for the long list. Biggest negative for me isn't the fact that I'll never (maybe) know what it feels like to have a baby growing inside of me. I'll never get those kicks, those flutters, that close incredible bond with this little human depending on me for life. I'll never get to watch my belly grow or heck, my boobs for that matter! I'll never know that excitement of planning how to tell my husband that we are expecting. No, those aren't the worst things. The biggest negatives for me not being able to carry my own child involve my husband. HE will never be able to be surprised by me telling him he's going to be a daddy. HE will never be able to hug close to my belly and feel his baby move inside of me. HE will never get to kiss my pregnant belly. HE will never get to watch me grow and never get to roll over in bed at night and just place his hands on my belly and feel those midnight kicks and flutters that would wake me up. My not being able to carry my own child doesn't hurt the most because I can't carry or experience those things, it's because HE can't experience those things.

I watched a video the other day, it was just a quick little thing but it made me silently weep until Allen noticed something was wrong. It was of a mother laying on her side, clearly in the later stages of pregnancy. She was walking her fingers across her belly and a little hand or foot would push up her belly. She'd then trace that tiny foot or hand and rub it. Then she'd do it again and again. Such a happy moment causes these crazy pangs of jealousy and envy. I want that. Then I think, "oh boo hoo, stop playing the woe-is-me card. People are going to get sick of you constantly whining about not being able to carry your own child." This, my friends, is my inner mind battle. I get upset because I don't get to experience this thing that so many women complain about, I should consider myself lucky, right? Some other woman is going to get the heartburn, the morning sickness, the back pain, weight gain, and birthing pain. I just get to sit by and watch it all happen, then get the reward at the end, my very own baby. Right? I should be thinking that way, right?

Wrong.

Sure, I'll never experience those bad sides to pregnancy, but those bad sides are all so worth it in the end. We will be sent an incredible angel to help us grow our family someday, and I'll be by her side through t all if she will let me. I'll hold her hair as morning sickness kicks in. I'll rub her back when it's aching, try my darnedest to cure the heartburn and let her crush my hand when she's in labor. That woman is enduring all of this for us. To give us this incredible gift of life. Here comes the positives..

I may gain an incredible life long friend. We will go through so much together as she brings mine and Allen's child into this world, and my only major hope is that she loves us as much as we hope to love her. Now here's a bunch of what ifs. What if the injections I'd need to develop enough eggs to harvest for the surrogacy isn't safe for my kidneys. What if my doctors just flat out tell me no again. What if no fertilized embryos survive in our surrogate? Then what? Well...then we adopt. I may not be able to get pregnant right now for the very reason that perhaps there's a child already born that needs me as much as I need it, and it's just waiting for us. Maybe this is my sign that I don't NEED to get pregnant because another life already in existence NEEDS us more. Perhaps us getting told no so many times by doctors is leading to a huge yes for some child somewhere in America just waiting for a loving family. We will be that loving family. I can't wait to see our child, whether someone brings it into the world for us by our side, or across the country. I can't wait for the happiness I'll feel when I watch Allen hold our child for the first time.

Here's a fun little factoid: did you know it's actually bad for Kidney patients to use normal deodorant or antiperspirant? Why? Because they contain a decent amount of aluminium and impaired kidneys can't filter aluminium causing a build up that could be toxic. Now there is aluminium in several items, so it's pretty much unavoidable, but cutting out whatever you can is helpful. Since deodorant enters your system through your pores, it not only gets into your organs, but also into your skin, and since your impaired kidneys can't filter it, it could lead to dementia or even bone disease.

Now, with that being said, my ever-thoughtful husband sought out and bought me an aluminium free deodorant after I told him this bit of info, lol!

It smells surprisingly decent (kind of like a soapy aloe) and it's a clear gel...however putting it on was...different. It feels very wet and stayed that way for a few minutes,  so I was walking around like Randy from A Christmas Story and felt like shouting "I can't put my arms down!" 

Now why am I posting an entire blog entry about deodorant? Because, it just goes to prove there are more hidden risks for us than you would think. I've been told no for a tattoo (I want one after my transplant), I've been told no for liquor or alcohol, I must reduce sodium and aluminium, can't take multi-vitamins (our levels fluctuate too often and we could be putting too much of something in our system. My doctors put me on a temporary supplement for whatever level I'm lacking at the moment), no to long periods of direct sunlight (our meds), no to pregnancy...you know, the whole reason I started this blog. 

Now you know why my blog is called "The Doctors Tell Me No", because that's what I hear far too much. No deodorant, no multi-vitamins, no babies. I will have my babies though, just not the way people seem to "accidentally" be able to freely do it, then abort or dump their baby in the snow or recycling bin because they don't want it. Seems fair, right? No.

I want to post all about my incredible husband today...just so you all can meet him for who he really is. His name is Allen and he's the biggest blessing I've ever been given. I can say all of the generic "my husband is the best" descriptive words like: caring, trustworthy, handsome, funny, bla bla bla. But guess what, he is all of those things and so much more.

I've had a rough past with men; several of them cheating on me or just genuinely making me feel like I didn't matter. I started getting to the point where I'd just throw myself out there on the first date! If you don't feel you can handle my illnesses, the costs and emotional destruction they could cause, if you can't handle my severe depression that makes me need you so bad while I'm pushing you away, if you aren't happy that I can't carry your child...then move along. I told all of this to Allen very quick into dating and he's always assured me he will be there no matter what. And he has been.

We met January of 2013...I was the Verizon employee who caught a glimpse of the most handsome giant she has ever seen (6'7"). I quickly made my way to the front to beg my manager to allow me to work with him because I just had this feeling I needed to. I even told a coworker as soon as I saw him that he was my future husband...she didn't believe me. I found out soon after I creeped on his Facebook that he was, unfortunately for me, taken. I patiently waited for him to become available because it all felt so different. I only saw him twice in person before our first date in March, but I just couldn't deny the feeling that something was much different with him.

Our first date took place at Bastone Brewery in downtown Royal Oak, MI. I had this terrible feeling he was going to stand me up, I mean why would such a handsome, successful man want to date me, the creepy Verizon tech girl? I came around the corner, and there his beautiful smile with giant dimples sat, waiting for me! I was so nervous and acted like a total fool, but I was able to snag date #2 :)!! Any time spent with him wasn't enough and it flew by too quickly! Finally, April 7th, 2013, he officially became mine, and I, his.

Our dating experience consisted of a crazy ex (mine) and a terrible diagnosis (his dad). His amazing father was diagnosed with stage 4 pancreatic, lung and liver cancer...they gave him 3 months to live. God blessed us and gave him MUCH longer than originally predicted...we got an incredible year and 4 months with him. In that time, he welcomed his first granddaughter, enjoyed an incredible, pool-filled summer with his grandsons and family, and accepted me as his daughter-in-law. Allen proposed to me September 14th, 2014 and we were married November 9th, 2014. Yes, we rushed it like crazy because we knew we were only so lucky to have this time with Al, Allen's dad. Allen made him a groomsmen which was amazing to have him up on stage with his son during our ceremony, he blessed our rings in front of everyone and I was lucky enough to get my very own dance with him! Even though he will not physically be there for our children, he will most certainly be a huge part of their lives!!!

Anyways, Allen and his family have been the most amazing people to come into my lives. I always say, God only puts people in your lives when you need them. Whether it's to teach you a lesson or be an everlasting part, you only meet them when you need to. I would have loved to know him before, of course, but I didn't need to. This man has brought me back to the real me. I was in a terrible dark place where I really didn't care if I died, I was unbelievably depressed, pushed everyone away from me, I was miserable and felt worthless...but then here comes 6'7" with his long arms and pulled me out of that deep, dark hole.

I'm not quite sure where I'd be if I never met Allen, what my life would be like, my relationship with my family or if I'd even have any friends. I am sooooo unbelievably happy he came into my life. He is the strength when I need it, the positivity when I can't seem to find it, the smile when mine is lacking and the faith when I've lost it. Now, I want to bring a child into the world with his amazing man because I KNOW he will be one of the most incredible fathers anyone could ever imagine. I love you, Allen!!!

Picture in your mind the one thing you've wanted more than anything. Now imagine someone telling you if you were to try to get it, there's a good chance you would die. That's what has been happening to me. I've wanted to be a mommy more than anything; being able to experience pregnancy, feel those kicks, go through the pain and finally, have that new love placed on my chest just seconds after birth, making my mind forget about all the pain. But 2 kidney doctors, my internist and my OB/GYN have told me no. No you can't experience the one thing women were basically made for because you could die. No they didn't say those exact words, but dancing around the harsh truth by saying "well...there are a lot of risks with your health that could cause you to lose your life if you were to get pregnant, so it may be best just to not try" hurts just as much.

You may be wondering (if you don't know me) what health issues I have. I am a Chronic Kidney Disease patient currently sitting at stage 4 status. My kidneys keep hopping between 18-25% in function and that alone is too risky to carry a child. It's very common for Kidney Disease patients to develop other health issues because your body is losing a battle with a very important organ. Due to my kidneys, so I've been told, I have developed stage 2 hypertension, my blood pressure being recorded as high as 239/180 (normal for my build is about 100-120/70-80). Because of my blood pressure, that raises another risk for me and the baby. To add to the list, I also have ventricular tachycardia, cysts about every other month on my left ovaries, possible endimetriosis and my uterus ejoys hanging out on my left side.

My kidney failure was originally caused by an autoimmune disorder called Hemolytic Uremic Syndrome (H.U.S) when I was nearing 3 years old. Basically the disorder attacks your red blood cells after a bought of diarrhea or dehydration and those damaged red blood cells clog the filtration of the kidneys which causes them to shut down.

(Click the link to read up on the disorder if interested in more info
http://www.mayoclinic.org/diseases-conditions/hemolytic-uremic-syndrome/basics/definition/con-20029487 )

I was placed on the kidney transplant list through Henry Ford Detroit March 29th, 2014...and I'm still no bit closer to getting a new kidney. I could POSSIBLY carry a few years after I get a new kidney, but there's always going to be risks. And who the heck knows when I'll finally be "qualified enough" (sick enough) to get my new kidney. Yes, I'm on the list, but insurance won't cover any testing towards my transplant if my kidney function is above 20%....so here I sit and wait.

All I want is 1 child of my own that I can carry. But it doesn't look promising. So from here on out, you will follow mine and my husband's progress towards seeking a surrogate or adoption and building our family on a bit of a rockier road than most. Guess it's a good thing we drive a Jeep ;)